Tiniest Muscle with Real Pull (Part 5)

Growing Climbing Bean Requires Planning

What does Memory Recovery Look Like?

Having recovered my memory in such a dramatic fashion has left me pondering various aspect of Memory. Pre-ABI, when my memory served me well I never paid attention to it. I happen to have excellent recall. I would remember names a month later after meeting a person for the first time. However, my memory for sequence of time was not always my strong suit.

There are so many different aspects to memory. But it is the aspect of memory that has improved my executive functioning that has been the game changer.

Getting my memory back has also given me some glimpses into how memory works. At least how it works for me. It has highlighted various aspects of how memory shapes one’s experiences and one’s relation to these experiences.

Waking Up

One would assume that one starts the day by simply waking up. Either the alarm goes off or in my case somewhere around 6 am I just wake up. If I’m in a state of agitatation due to sensory loading from the previous day I wake up at 5 am or earlier. If I’ve had a demanding day I wake up an hour or so later than usual.

Prior to my dramatic memory recovery I would wake up by opening my eyes. Nothing spectacular. However, in looking back my brain would still be half asleep. It would feel like my brain refused to take in much of anything in the first half hour or so. No I’m not a coffee drinker waiting till my morning fix kicks in. It was like my brain wouldn’t get started.

Now, when I wake up and open my eyes, my brain is immediately active. I notice that I’m think back on some of the highlights of the previous day. I’m thinking about the new day and what I hope to do. I find myself forming the initial plans for the day.

Since it’s gardening season I consider what needs to be transplanted, what area needs to be hoed or watered later in the day. Or whether things are fine and I’ll take a day to do something different. Finding myself making a general outline for the day is new and rather unfamiliar territory.

Prior to my dramatic memory recovery the process of thinking ahead or the casual planning just didn’t happen. I wasn’t even aware that it wasn’t happening. My brain just wouldn’t go there. It wasn’t a matter of just ‘telling’ myself that I need to make a plan. When I did make a plan I would forget once I got up. Something would distract me. It was a matter of ‘out of sight, out of mind’. So often at the end of the day I would comment on something that I had totally forgotten to do. It might have been a fleeting thought on waking or at some other point in the day and then it just faded without a trace.

What Has Actually Changed?

If you read my first blog on this series, Tiniest Muscle with Real Pull, I described the change following my first two hours of Listening Therapy. The Safe and Sound protocol that I was working through somehow, almost magically, brought back a major part of my ability to remember.

In fact I had fast tracked the Safe and Sound protocol. The intent was to listen for 30 minutes a day giving time for the necessary changes to happen. I covered the first two hours in two days. The four days would have given me extra time to have my body take in the healing effects of the Listening Therapy.

The Safe and Sound protocol focuses on exercising the stapedius muscle. That muscle is a critical link in the chain of links between the eardrum and the brain. By improving the muscle tone of the stapedius muscle, the brain is getting a more accurate interpretation of the sounds in a person’s environment. With poor muscle tone with th estapedius muscle the brain is getting sounds in the frequency range of Fight or Flight sounds rather than socially engaging sounds. With improvement in the sound frequency range the brain has room to do more of it’s normal or social functions. Receiving sounds in the frequency range that signals normal social activity the brain has less of a tendency to go into sensory overload or into a state of alarm.

The Black Hole is Fading

Once my brain was no longer jumping into Fight or Flight mode unexpectedly several times an hour, (not that I was consciously aware of it) my brain could actually pay attention and retain what I wanted to remember. In other words my autonomic system wasn’t getting hijacked several times an hour, creating fatigue and distracting me from my memoary and plans. In that way shutting down my executive functioning.

When I am in emergency mode, encountering Fight or Flight my brain simply reacts to what was happening in my environment. It leaves me with very little capacity to plan. When my planning is regularly interrupted only the simplest of plans work. Anything more complicated or multi-step such as problem solving gets derailed.

By regularly going into Fight or Flight mode I would very easily get distracted. If I was on my way to fetch something, and an alarm was triggered in my autonomic system, I would see something that needed attention and forget what I was planning to do. I would simply react and deal with what ever had my immediate attention. Needless to say, what I had intended to do was suddenly no where on the horizon. I would often not even be able to recall it if I tried. It’s like it disappears into a black hole.

Is There a Downside?

Living with a dramatic improvement of my memory does have a downside. Are you surprised? You might be wondering how something that spectacular would have a negative side.

I was asked a couple years ago when my sleep pattern was much more disrupted than it is now, what goes through my mind when I can’t sleep. The question seemed odd because while I’m lying awake nothing of any consequence really goes through my mind. Pre-ABI I never thought that was possible.

I realized that when I lay awake at night my mind was mostly blank. I did not think back on what happened during the day. My inability to plan seemed to run parallel with my inability to reflect on events and related consequences. There was no regret of what I, pre-ABI, would have considered to be bad planning. In fact I didn’t really get annoyed when I was lying awake. I just considered it inconvenient.

I dealt with the inconvenience with a simple rule. If I don’t fall asleep after being in bed for an hour I simply get up and read till I’m ready to fall asleep. If I wake up in the middle of the night and it takes me more than an hour to get back to sleep, I do the same things. I simply get up and read till I’m ready to fall asleep.

Since my dramatic memory recovery my night time waking experience has changed. I will now replay past experiences both recent and otherwise. Other times I’ll start planning what I hope to do in the morning.

Occasionally the ‘midnight rat begins to gnaw’ as some would refer to it. Reliving past regrets or decisions is back. Fortunately not too often. Since I’m once again able to plan, I’m also able to commiserate about plans that did not go well. I must say, that’s a small matter compared to the major benefits of improved memory.

Momentary Losses

The dramatic improvement in my memory still gets very easily disrupted. When I experience sensory overload, whether that is overload from cognitive demands, emotional overstimulation, or chaotic social settings, my working memory, my executive functioning shuts down. Suddenly I’m back to serious forgetting. Suddenly my planning isn’t happening, or it is happening very poorly.

It’s not a matter of having lost what I’ve gained. Once I’ve gone through two or three days of recovery and the sensory overload has cleared, my memory and executive functioning is back.

Reinforcement

My ongoing work with Listening Therapy is to reinforce the gains I have made. The goal is to get to a point where the sensory overload, be it cognitive, social, or emotional doesn’t happen or doesn’t cause significant set backs.

I continue to be directed by my Listening Therapist as I’m working through new protocols. Each new protocol is based on how I respond to the listening sessions.

Summary Thoughts

What I find fascinating about my memory recovery is my opportunity to reflect on how the brain works. Going through the changes makes me more aware of the Before and After contrast, Pre-ABI and present. That in turn gives me a glimpse of what has changed. After more than 5 years of adjusting to a ‘New Normal’ (which is not normal and never will be totally normal) I’m being once again reacquainted with much of the ‘Old Normal’ and seeing how it contrasts to the past 5 years.

About 10 years ago I read Lisa Genova, Left Neglected. Following a brain injury from a MVA the main character Sarah lost awareness of the left side of her body. Whatever was on her left side just didn’t exist for her. She did not know she even had a left hand. The brain could not comprehend that.

I now have a glimpse of what Sarah was experiencing. It wasn’t a matter of ‘telling’ her brain that the other half of the world did exist to her left. It’s not a vision issue. It’s just not part of the brain function. For Sarah, whatever appeared within her range of vision out of left field came as a complete surprise.

I compare Sarah’s challenge to a discussion on being totally blind. Being blind is not the same as being blindfolded. Being blind is not a matter of just ‘seeing’ black. If you are blind, I’m told, when it comes to vision there’s just simply nothing there.

As I go through differen stages of recovery I often wonder, “How many mysteries does the brain hold?”

Tiniest Muscle with Real Pull (Part 4)

I’ve been working with my Listening Therapist for a few weeks. It’s been a growing experience. While the initial dramatic gains were a great motivator, it takes diligent work to carry out the therapy protocols.

I’m finding it’s required me to make it a priority in planning my day. Even if I do the hour or half hour of listening late in the day, it’s still a priority. I’ve experimented with the time of day to see if that makes a difference.

I’ve generally chosen to do my listening in the evening since that’s the time of day that I’ve generally felt most calm. It’s the time of day that the challenges of the day, if I’m in a recovery phase, have the least bearing on me.

More than a walk in the park

Once I experienced the initial gains additional listening protocols have been set up to reinforce the gains I have made. As my ears and various parts of my brain are adjusting to the changes created by the Listening Therapy, the rest of my body has not been taking a holiday. The listening therapy has affected my body in a numerous ways, just as my original injury affected me in numerous ways.

It’s as if my body is going through a major reset after five years of adjusting to living with an ABI (acquired brain injury). The reset can be compared to a doctor having to reset a bone that has not healed properly. The process involves what looks like a setback in the healing process. Fortunately, as I outline below, the adjustments are much shorter and much less intense than the five years of recovery.

I have recognized seven areas where I have experienced a reset which has been followed by remarkable improvement.

7. Muscle Weakness

Over the past few weeks I’ve noticed that my level of strength has dropped off. I wasn’t aware of the change initially since I’m used to having bad days mixed in with good days. But the loss of strength has been quite consistent for a few weeks. I notice I’m not able to lift or pull with the same intensity that I am accustomed to.

At times the loss of strength would result in dropping something I thought I could lift. At least I didn’t break any family heirlooms. Other times I would need to use both hands when I otherwise could do the task single handed. And then there are some tasks I have put off because of the physical effort required. Even initially these issues weren’t worrisome as I’m used to experiencing unexpected physical changes.

One explanation I was given made sense to me. With my brain receiving signals through my ears of a more social nature, I wasn’t slipping into ‘fight or flight’ mode as frequently. The ‘fight or flight’ mode would be triggered by the autonomic system when the brain receives sounds in the frequency range that signals an alertness to danger.

The Listening Therapy is calming the autonomic system resulting in fewer transitions in and out of ‘fight or flight’ mode. This means my muscles aren’t in constant tension ready to react to alerts from the brain.

6. Headache

I was a few days into the listening activities before I took note of my headache. My headaches have varied over the past 5 years. Initially I was in constant headache mode. Only the intensity would vary. Since using over the counter medication didn’t alleviate the discomfort I decided it was best to leave it. Over time the headache became intermittent. At that point in my recovery I used it as a gauge to monitor my activity level.

After starting the Listening Therapy it did take me a while before I realized I was experiencing headaches on a rather consistent level. While they were low grade, the discomfort would become more noticeable when I got tired or wasn’t distracted by some activity.

Now, after about a month I feel like I’ve turned a corner on that front.

5. Vision Issues

Since starting my Listening Therapy activities I have been experiencing issues with my eye sight. I started to re-experience ghosting.

Ghosting is a condition in which images seem to have a shadow. When looking at black lettering I will see a grey shadow as part of the lettering. This is most noticeable with road signs because I know I’m looking at plain block letters. Other signage might have a shadow to create a three dimension effect. So I can’t detect ghosting as easily when looking at store front signs or lettering on vehicles.

When I’m experiencing ghosting lights can appear very different. Rather than seeing a pin point of light I will see an elongated light, sometime stretching horizontally while other times stretching vertically. When I have a severe situation of ghosting the light will stretch vertically and horizontally creating a Christmas tree shape.

4. Tinnitus

I have been aware of an increased frequency of experiencing ringing in my ears, also called tinnitus. Apparently this is not uncommon when working through the listening therapy. I had gone from dealing with tinnitus 24/7 for the first couple years following my injury, then intermittently and finally it seemed to be almost completely cleared.

The recurrence of tinnitus is expected to be temporary side effect of the listening activities.

3. Neural Fatigue

One of the benefits the Listening Therapy was expected to deliver is dealing with less fatigue. Since the ‘fight or flight’ triggers were being reduced there would be less cause for fatigue. (Let me just point out that physical tiredness following a strenuous physical workout is quite different. Physical tiredness is invigorating because it sends a good feeling through the body as well as building momentum for inducing sleep.)

Off and on since starting the Listening Therapy activities I’m finding myself dealing with fatigue more frequently. That is not surprising because the therapy is changing the way the brain is receiving sensory input. The changes are demanding on the brain.

When starting the Listening Therapy I was advised to reduce my other daily activities. Since I was in the middle of setting up the garden I have continued to do what needed to be done. Call me non-compliant on that level. The advice was for my benefit and comfort.

Very recently I feel I’ve turned a corner in this area as well. While having said that I don’t know whether I will hit another patch where my level of fatigue will increase for a period.

2. Emotional Sensitivity

I am experiencing a higher level of emotional vulnerability. Hearing of hurtful experiences has once again made me more easily prone to tears. As the Listening Therapy opens up different areas of my brain, sensitivities from the past will influence my daily functioning.

This increased emotional sensitivity comes during a week when “Black Lives Matter” is receiving significant media coverage. I’m confronted with the hurt that surrounds this matter whether it’s video clips, news articles, radio talk shows or documentaries. It’s the personal accounts and the long term affects that hits me hardest. While I want to be better informed I know I need to ration my time and counter balance my day with other topics.

1. Heat Exhaustion

The first summer after my TBI it became apparent that I could not handle the heat the way I have other summers. I needed an air conditioner just to exist or at least if I expected to be somewhat comfortable. I am curious how the Listening Therapy will affect my tolerance for hot weather. I’ve seen some indicators that there is potential improvement. I’ll have to wait till the weather starts to heat up in July to find out more.

On Reflection

While the listening activities are enjoyable, the Listening Therapy is not a walk in the park. I find the music enjoyable with a wide selection of classical composers. I particularly find the Gregorian Chants enjoyable. They give me a sense of grounding with the resonating overtones. They remind me of my tendency in the past five years to slip into humming when my body was moving into sensory overload. The vibrations set up by humming I found out recently works because it calms the vagal nerve.

I do prescribed physical exercises for fifteen minutes, as part of the Listening Therapy, during most of the daily one hour listening sessions. Outside of the fifteen minute activity the Listening Therapy seems for the most part to be a passive activity. Meanwhile my body is working hard as it absorbs the sounds and makes healing changes in my vestibular and cochlear areas of the middle ear. As the ear is being conditioned to find a proper balance between air conduction and bone conduction my body is adjusting to the changes as the improved quality of the sensory input reaches my brain.

The Listening Therapy is a personalized series of applications using the Tomatis Method. This method provides a natural approach to neurosensory stimulation. The method was developed by Alfred Tomatis to improve people’s motor, emotional and cognitive skills. In my case the emotional and cognitive challenges have been the most persistent following my TBI (traumatic brain injury).

The Tomatis Method is intended to improve the listening potential of the brain. The effectiveness of the method is based on the understanding that 80% of the brain’s stimulation is connected to the ear. The Tomatis Method has been refined and improved on since the 1950’s.

The Tomatis Method recommends a rest period of a few weeks after completing 18 hours of Listening Therapy. This for me speaks to the profound changes the body; the brain, the ears and the rest of the autonomic system is adapting to. The rest period is an opportunity for the natural healing to take place following the momentum created by the Listening Therapy.

How I Got to This Point

Within a couple months of my TBI, my daughter directed me to two formative books by Norman Doidge. The books deal with the idea that following a brain injury one can experience dramatic healing. He demonstrates the amazing potential for the brain to heal. He uses the term ‘neuroplasticity’ to label the process the brain goes through. The first one I read was “The Brain that Changes Itself”. The second book is “The Brain’s Way of Healing”.

While I believed that Norman Doidge’s idea that the brain can be healed I did not know where or how to begin. That started to change for me about a year ago. A friend directed me to an article of a 51 year old male who had sustained a TBI through a MVA (motor vehicle accident). His challenges very much overlapped the challenges I have been dealing with. I started to inquire about a therapist who could set me on the path of healing.

Eventually I found a Listening Therapist, also known as a Listening Consultant who was prepared to work with me. The Listening Therapy is based on the Tomatis Method, designed to assist children with learning issues. It was also designed to assist children on the autism spectrum. Using the Tomatis Method to provide support for people with a TBI is a more recent application of the method. The Tomatis Method coincides with the idea of neuroplasticity developed by Norman Doidge. I had found the catalyst, the intervention I needed to affect the changes that could make neuroplasticity a reality for me.

In various ways my Listening Therapist and I are working together to design and refine the protocols based on the feedback I provide. I’m finding myself on a journey that I had never imagined. I must admit, it is one exciting journey.

The journey is reflective of gardening in the sense that it all starts with a ‘seed’ of an idea. Given the right conditions, and finding the right environment seeds will burst with growth. Given the proper care and making the appropriate adjustments plants will grow and in due time bear fruit. I find it an interesting coincidence that I’m working through the therapy as the same time that I am developing a half acre vegetable garden, a garden interspersed with some flowers giving the practicality of growing vegetables colour and character.

Tiniest Muscle with Real Pull (Part 3)

20200526_193902
St. Clair River near Corunna

The Benefits Keep on Coming

What else has changed following my foray into Listening Therapy? My curiosity was once more whetted recently as I completed a very different road trip.

Having experienced significant improvement from the Listening Therapy I have been eager and curious about the extent of the changes in my daily functioning. Since I have been social distancing, I have various activities that are on hold.  So I couldn’t just try out some of the pre-isolation type activities.

Life has been more predictable with social isolation being imposed.  In many ways the demands to exercise social distancing  has drastically reduced my incidents of sensory overload.

The first improvement that I experienced from the Music Therapy was seeing a dramatic improvement in my short term memory , and the resulting  improvements in my executive functioning, I keep wondering what other positive changes I’ll be seeing.

Imagine a Road Trip…

For the past 5 years road trips have been a real challenge. In 2016 I managed a road trip to Nova Scotia and PEI. A 5000 km road trip. Each day when I was on the road I limited myself to 300 or 400 km with a lengthy recovery break every 100 km. A few months back when I found out about vestibular ocular dysfunction I was able to put in some accommodations that reduced the negative affects of road trips.

While accommodations are helpful, they don’t get at the heart of the problem. The accommodations can be a nuisance but at least there is the benefit of an improvement in my quality of life.  My main accommodation with driving or being a passenger was wearing wrap around sun glasses. That in itself is not a disruptive accommodation. Even with a couple pit stops I still needed some recovery  time when I got to my destination.

A Game Changer

My most recent road trip was about 450 km. I was able to drive the whole distance with one short 15 minute pit stop to stretch my legs. The whole trip took me 5 hours. I chose some secondary roads to make part of the trip calmer. I had snacks and drinks on hand for the trip. I did chose to use dark wraparound sunglasses as an accommodation. The sunglasses was to give me a bit extra peace of mind. (I might forego them for the return trip.) I arrived at my destination in fine form. I experienced no heightened level of sensory loading.

On arriving I did take a one hour nap. In hindsight needing the nap was not really from having my TBI side effects from being on the road. It reminded me more of the kind or weariness that comes from being on the road on a hot day. It was 35C with the humidex up at 41C.

This trip was in sharp contrast to the routine that I’ve gotten used to over the past 5 years. The routine had included switching off driving with my spouse every 100 kilometers, taking 2 or 3 breaks of 45 minutes to an hour and a half, and needing a day or more to recover after arriving at my destination. There were times it would take me 4 days to recover. Often that would be in time for the drive home.

What Improvements are Possible?

This recent road trip experience makes me curious as to what other benefits I will experience from the Listening Therapy. The stapedius, being the tiniest muscle in the human body is like “The mouse that roared.” What else can that mouse change?

There is one question that I have wondered about but won’t be able to answer. It is now a little over 5 years since my injury.  My injury happened in January 2015. If I had started the Listening Therapy a year or two after my injury would I have experienced the same dramatic improvements? Would the improvements have been more gradual?

What prompts me to ask these questions is that there is what is called spontaneous healing following an injury. However, in my situation my ability to function gradually declined in the first couple months following my injury. My inabilities continued to increase before I started to see some spontaneous healing.

Regardless, whether the Listening Therapy would have had a different trajectory in my recovery, I’m am so thankful for the improvements that continue to surprise and fascinate me. I would never have asked for this kind of improvement for fear of disappointment. Why would I ask for something that I didn’t think was possible?

During my career as an educator I’ve had sessions with my staff where I urged them to dream big because you will be surprised what is possible. So that leaves me with another question, “Why didn’t I take up my own challenge when it comes to finding healing from my ABI?”

Post Script (four days later)

I drove home 4 days later. I wasn’t sure how well the return trip would go. If there’s one thing living with ABI has taught me is that no day is predictable.

I left for home shortly before noon. It was a rainy day, with cooler temperatures. Took two pit stops of about 10 minutes each. Lost about a half hour in traffic driving through the metro area in the late afternoon. Even though the sky was overcast and raining at times, I found the sky too bright. I wore my wrap around sunglasses for the whole drive.

I arrived at home five and a half hours later in fine form. I did not need a recovery time. Instead I went straight to my half acre garden to see what had happened in the past four days of warm and wet weather.

Even though much had sprouted, the weeds were still very manageable and I felt satisfied that all was good. I felt taken care of.

We are Social Beings

20200215_145558
Isolated From Family

My recent posted about how I’m benefiting from Social Distancing though it does come with some significant down sides. Even though my days have been more predictable and I am generally operating well within a manageable sensory loading level, there are parts of my life that are sadly on hold.

Unfortunately, the downside is quite significant. At any other time it might not have been as troubling.

An Aging and Ailing Parent

About two months before my mother’s 92nd birthday, she ended up in the hospital. By the time the COVID 19 restrictions had shut down hospital visits she had been dealing with a seizure. This has made getting in touch with her very difficult.

My only contact with her is by phone. She has a cell phone. In her late 80’s she learned the basics of using it. Well to be candid, she learned to use the phone and address book. It took quite some time for her to start texting. She only uses texting with one close friend.

A key drawback in staying in touch with her is that she is no longer able to answer the phone herself. So, I need to time my call when a nurse or someone else happens to be in her room. The nurse or other personnel will pick up the phone for her, put it on speaker phone and leave the room.

There are days when I’ve dialed several dozen times and have not been able to get through. I’ve learned that meal times are generally the best time to get through. However, I think they shift the meal times depending on how busy things get on the ward. It’s taken some persistence to say the least even so there is no assurance of actually getting through.

The real challenge is helping my mother understand why she is not able to have visitors. This is the part that is most difficult. The loneliness that sets in is unfathomable. She is no longer able to read. She no longer does needle work or crocheting. All I know is that she passed much of her time in prayer. It’s amazing how despite her situation her prayers are ones of thanksgiving and gratitude.

Besides not being able to visit her, I am also not really sure what kind of care she is getting. I met several of her care team before the COVID lock down and was pleased with the team. Without being there I don’t know what is being inadvertently overlooked. Someone had brought in a CD player for her but the last I heard it has gone missing in the process of changing rooms. I’m not able to step in and find some remedy. And then there is the small things that can make a big difference in having someone feel comfortable and cared for.

Meanwhile I do the best I can. I am thankful that she had not yet been moved to a long term care home given the track record of some many of them.

Recently my mother tested positive for COVID 19. I am thankful that she is asymptomatic. When she was retested two weeks later she once again tested positive but remains asymptomatic. I guess she’s had 92 years to build up her immunity. Yes, I hang onto little blessings.

My one hope for her is that she will one day be able to visit with my father. I can’t imagine being married for 69 years and than have virtually no contact for over two months.

New Granddaughter

My other drawback with the Social Distancing is that I have not had a chance to visit my fourth grandchild, born in April. I’ve seen pictures of her. I’ve had video conference contact. There is nothing that can replace sitting with a newborn grandchild and dreaming about the life that lies ahead of her.

The new normal will mean that things cannot be done as they were in the past. We need to find new ways to share as family and remain in contact. Whatever new and novel ideas that might arise, as necessity is the mother of invention, nothing can mean as much as the ability to reach out and touch. There is no substitution for a hug and looking someone in the eyes as you sit with them.

That is two of the significant drawbacks of living with Social Distancing. There are many minor inconveniences that I can get used. A restricted personal routine is not that major in the grand scheme of things.

At this time all I can do is pray and look ahead with hope and a fair bit of longing.

What’s the Deal with Short Term Memory

20200518_111006
Favourite Games as Kids

Having a major improvement with short term memory is a strange feeling. I have lived with short term memory challenges for over five years. Since my ABI (acquired brain injury) I have experienced very little improvement in this domain. It’s a strange feeling to listen to something while trying to remember it only to have it disappear a few seconds later. While making a list is fine when planning a few errands there are so many situations where it’s impractical to make a note. Though walking across the house and forgetting where I was going or why is also very impractical.

I’ve used various techniques or prompts to help me remember things. That takes effort and persistence. It doesn’t come naturally so it’s something I have to try to remember. (Talk about a catch 22.)

20200518_105648Loss of short term memory invades each day in so many ways. It goes beyond losing track when I’m being given too many instructions. It goes beyond forgetting why I walked into the basement or the bedroom. If it’s late at night and I’m tired I usually don’t forget why I walked into the bedroom. The loss of short term memory has almost everything to do with often not achieving what I set out to do that day.

I experience some frustration with short term memory failing, but it is something I’ve learned to live with. When my expectations are lower, my frustration is lower.

With having short term memory challenges, many of the events or details of events of the past five years have not become part of my long term memory. So often I simply say, “I don’t remember.” That is often my response when someone say, “Remember how we…”, or, “Remember when we…”

A Surprise Gift

Getting short term memory back (through listening therapy) doesn’t seem like a big thing at first. Yes, the initial realization was exciting. Yes, it is less frustrating. Yes, I do feel more productive. Getting it back in such a dramatic fashion helped me realize many benefits that would otherwise not have been as obvious.

Having my short term memory improve by about 80% is quite dramatic. What is strange is that the improved memory is not spectacular. By that I mean, having good short term memory is something I’ve lived with most of my life so what is a dramatic change is really like returning to normal. Normal isn’t dramatic. It’s just life as I have known it for so many years.

20200518_105841Getting short term memory back affects so many things in my daily routine and activities. Getting it back so suddenly made me very aware  of what changed in my day. Short term memory encompasses so much of what we do and who we are. The benefits move way beyond being much better at playing the game Memory where one needs to find matching cards in an array of over 120 picture cards. Some interesting ones that are easy to remember, some bland ones that can be confusing. But remembering the location to make the matches is the real challenge.

Remembering details

Short term memory is about noticing things in passing and being able to recall. In the past week I find myself replying to questions with, “Yes I saw that over in…” In my wandering about the house, the garage, the outbuildings, and the yard I am remembering so many details. Previously I might remember having seen something but for the life of me I couldn’t remember where or how long ago I might have seen it. Not very helpful.

Carrying out a project

While working on a project I regularly put down one tool and pick up another. I use some hardware or other supplies and set it down. The amazing change is that now when I need a tool that I put down ten minutes ago I can usually find it back without going into a ‘search and rescue’ routine before being able to use that tool. I can remember where my various supplies are even though I have things stored in the garage, the basement, or in one of three out buildings. (Having everything under the same roof would be better but I don’t have such luxury.)

Planning

Without a properly functioning short term memory it is very difficult to plan. Planning requires remembering detail. It requires remembering the sequence of tasks to reach the goal. Plus, planning kind of goes out the window when too much time is spent on ‘search & rescue’ of missing tools or supplies.

Taking Risks

I have had a few too many situations where I was not able to properly see the physical risks involved. One possibility is failing to note details. Not being fully aware  of my surroundings. For example, failing to notice that a ladder is not properly set can increase the risk of falling. Hitting my head on a tree branch was a serious setback that resulted from not being aware of my surroundings.

Other times it’s not being able to look ahead, kind of like failing to plan ahead and see what might go wrong two or three steps later.  I’ve experienced some mishaps which left me saying to myself, “Now why didn’t I realize this was a bad plan.” Now I’d say, “Because there wasn’t a fully worked out plan.” A common mantra is “Failing to plan is planning to fail.” It’s no different with being unaware of failing to plan.

Focus and Attention

20200518_105739While dealing with short term memory issues I would often find myself getting sidetracked. Either I would get sidetracked because I forgot why I was headed to a certain area or I would spend so much time looking for something that I wouldn’t get back to the activity I was engaged in.

With my focus interrupted I would inadvertently start doing a different activity. It might be a simple thing like setting a few things aside that were in my way.  Before I know it I’m reorganizing the whole closet or the whole room.

When you have short term memory challenges what is right in front of you is most real. So if there’s a mess in front of me then that gets attention. Unfortunately with short term memory challenges that doesn’t mean the new activity will be completed without some other interruption.

Problem Solving

While my loss of ability to problem solve has been a real disappointment, I am not sure how much that might have improved. The lack of problem solving abilities over the past 5 year seems to be from having a combination of not being able to bring enough details together as well as having challenges with mental flexibility. I think it might also be linked to difficulties with  planning and anticipating outcomes.

Only time will tell as situations arise whether I’m experiencing an improvement in problem solving. Even if it’s not as dramatic as some of the other improvements related to recovering short term memory.

Executive Functioning

The biggest casualty of short term memory loss is executive functioning. Executive functioning is the ability to pull it all together; noting details, staying focused on the task at hand, planning the day or the steps of an activity, and not missing important things like tracking, time, deadlines, or routines.

To  suddenly find my executive functioning improved by about 80% was a real eyeopener. It made me realize more clearly what I’ve been missing for over 5 years. The day the change dawned on me I was finding myself so much more productive. I wasn’t getting distracted. When I needed something I knew where to find it and hardly missed a beat continuing on my activity. I found myself thinking ahead to what the next step would be and what tools or supplies I needed.

I can’t put into words the joy, the sense of fulfillment, the pure pleasure of doing the activity, seeing the progress. It was something I had decided long ago I would no longer be able to achieve.

Grieving Loss

Grieving the loss of an ability is setting a lower bar for oneself. As much as I know I needed to do that as part of accepting my ABI, in many areas I have been slow to do that. As I kept remembering what I was capable of doing, I just couldn’t bear to put that behind me. I built our 1500 square foot house some thirty years ago with help from family and two trade’s people. After my  injury I I couldn’t even build a 100 square foot out building without having real challenges.

I find it hard to grieve a loss when it’s a sudden loss. It’s easier to accept losses that happen over time. I can’t run as fast as I once did. That’s fine and acceptable. I don’t have the same endurance playing soccer as I once time. That’s fine and acceptable. I find the sudden loss of certain abilities difficult because it’s like someone is telling you to consider yourself 10 years older over night.

Recovering a significant part of my short term memory is like welcoming a friend back. It’s like enjoying a nostalgic moment that keeps repeating itself time and time again. If that doesn’t put a smile on my face, not much will.

Tiniest Muscle with Real Pull (Part 2)

20180718_164457
Street Art – Kingston, Ontario

From Euphoria to Setback

My introduction to music therapy started with a major break through in my ability to function on a daily basis. I was aware that once the first phase of my therapy was completed the improvements would have to be reinforced by going through several follow up protocols.

In looking back on the first phase of my music therapy it looks kind of like ‘beginner’s luck’. Beginner’s luck when learning a new game gives you a taste of what the game feels like. However you can’t become a pro in one day and expect each game to go great. But if it gave you the ‘bug’ you’ll stick with it.

That is kind of how my introduction to music therapy with the Safe and Sound Protocol (SSP) seems like. The gains are real and I continue to enjoy the improvements with my short term memory and executive functioning. However I need to follow it up with additional music therapy to reinforce the gains that were made. I can’t expect a quick fix even though I experienced a great start. Despite experiencing a setback, the gains have not been lost.

Not only did I enjoy the euphoria of the initial benefits of the SSP, but more importantly it showed me the amazing power and potential of Listening Therapy.  Anything that has such profound power needs to be handled with skill, care and diligence. The pre-consultation of administering the Measure of Foundational Ability assessment is where the therapists applied the skill of planning the sequence of therapy protocols.  The more care the client takes in noting and documenting the neurological and physiological changes that happen, the better the therapist can manage and direct the treatment. The diligence and timely oversight provided by the therapist helps direct the therapy toward maximum effectiveness.

Intensive Listening System

I was three days into the iLS (Intensive Listening System) Sensory Motor protocol of my therapy when things fell apart for me. On day three, about three hours after my session a persistent headache set in. In addition to that I was experiencing tinnitus, something I have been clear of for about a year. As the day progressed my fatigue became progressively worse.

By early evening my headache had cleared and I went ahead with the second half of my iLS therapy session. By late evening I had a noticeable headache. Three hours into the night I woke up from a nagging and growing headache. After being up and about for an hour I went back to bed and manage to sleep a few more hours.

When I awoke the next morning my day did not begin bright and clear for me. My headache became more pronounced. My level of fatigue was unusually high. I was emotionally very vulnerable and easily found myself in tears. When I stepped outside I noticed my eyesight was giving me trouble.  I was experiencing ghosting (sometimes wrongly referred to as ‘double vision’). As the day progressed I was having cognitive challenges. Words would escape me and create noticeable pauses when conversing. Putting this altogether I realized I was dealing with an all to familiar case of significant sensory overload.

I had not dealt with serious sensory overload in quite some time. I had definitely not experience anything like that since social distancing was imposed almost two months ago. So this was an unexpected and disappointing turn of events.

What’s Going On!

I was disappointed with the setback. Since I had experienced the potential of the therapy, I was not inclined to throw in the towel. I shared my observations with my Listening Therapist as I was keen to understand what went wrong and what needed to be done differently.

The intent of the iLS  Sensory Motor phase, that I had been doing was intended to gradually add Bone Conduction into my listening mix. The plan was to start off with most of the sound coming through by way of Air Conduction and a small percentage of the sound coming through by way of Bone Conduction. The intent was to have my ears and brain slowly adjust to a proper balance between air conduction and bone conduction. (An explanation of the importance of a balanced between AC and BC is in my previous blog.)

The first Sensory Motor session was designed to have only about 6% of the sound come in by Bone Conduction. With each session the Bone Conduction would be increased an additional 6%. On day three things went off the rails for me. I went through a two day recovery. Something that I have not had to do in quite awhile.

I don’t think it’s a matter of “no pain, no gain.” The music therapy protocol is customized for each person’s particular needs. No two people are alike. This therapy is used to serve people with emotional trauma, physical trauma and conditions like autism or learning difficulties. The protocol is different for each type of need.  Within each type of need the program is customized for each person.

Redirection

By the third day I had almost completely recovered from my sensory overload. The cognitive overload was no longer leaving me stuck for words. My tinnitus had cleared. My energy level of back to normal and the ghosting had cleared. I was left with some residual effect of the headache. I was ready to move on with a modified protocol.

The focus of my therapy was adjusted. The goal of balancing Bone Conduction and Air Conduction is on hold for now. The current program is to first deal with a balance between the inner acoustics of the ear’s vestibular and the outer acoustics of the cochlear and middle ear muscles. The program involves working out a delicate balance between the inner acoustics and the outer acoustics.

The iLS Sensory Motor program that I stopped using had too much bass or low frequency sound input. It will take some time before I am ready for the Sensory Motor protocol. It was the amount of bass or low frequencies sounds that I’m not ready to handle.

I am now dealing with the Concentration and Attention phase of the iLS program. I will need to decide how much Bone Conduction I can tolerate. It might be best to work with zero Bone Conduction for the time being and slowly introduce it as my body responds positively. The Concentration and Attention protocol is intended to strengthen the muscles in the cochlear of the middle ear.

I’m hopeful about the progress. I also learned the importance of doing the Listening Therapy in a comfortable, friendly and safe type of space. A key part of the program is to move my autonomic system away from the Fight and Flight response to sounds in my environment. For me, an added part of feeling safe is knowing that my therapist is closely monitoring my progress and addressing my challenges promptly. This helps with the relaxation while listening and letting the music do it’s magic.

Unlike most learning where you are expected to pay attention and take in information, the music therapy is different. With music therapy you don’t need to be focused or attentive. The main expectation is to be relaxed and comfortable.

Tiniest Muscle with Real Pull

20200503_131323
Greenhouse or Conservatory?

It was a wonderful surprise experiencing a major improvement in my short term memory after two hours of music therapy. I started the Listening Therapy five years after my injury. Why not earlier? Mainly because I hadn’t known about the treatment.

My short term memory challenges impact several areas of my daily functioning. it effected my executive functioning, planning, keeping things organized and maintaining focus. There are probably other related elements but those are the elements that come to mind.

How It Happened

I was about 3 days into a minor building project, building a small greenhouse from repurposed materials, when I started my Listening Therapy. In working on the building project I was struggling with the daily frustrations of having to remeasure the same things time and again. I take a measurement, walk ten steps and then question my recall of the measurement. Eventually I got the first part of my project figured out.

I was two days into a 5 hour Safe and Sound Protocol near the start of my Listening Therapy when I realized something had changed. I found myself remembering measurements up to 10 minutes later. I was no longer misplacing tools. Hard to believe what happened. Over the past five years misplacing tools had become all too familiar.

The progress on my project started going much smoother because I wasn’t wasting time looking for tools and getting sidetracked. It had become quite common for me to walk to the garage or my lumber storage to pick up something and then find myself reorganizing things or doing some work on an unrelated partially finished project. That wasn’t happening. I would remember what I was looking for. I would know where to find what I needed. I would stay focused on what I set out to do. I would make note of things I would need later.

20200502_095824
The view from within

This change was the most exciting improvement in my five years of recovery. The dramatic change after two hours of music therapy was far beyond what I expected. So let me give you some background.

Safe and Sound Protocol ™

The SSP (Safe and Sound Protocol) is a research-based therapy showing significant results in just five days in the following areas:

  • Social and emotional difficulties
  • Auditory sensitivities
  • Anxiety and trauma related challenges
  • Inattention
  • Stressors that impact social engagement

The above checklist taken from the SSP website succinctly summarizes and matches the areas of challenge I continue to struggle with. This is the information and treatment I would have welcomed a few years back. I had heard inklings of information related to SSP.

Not long after my brain injury I had heard comments that the daily challenges following a brain injury often had to do with the ear. My problem was not knowing where to pick up the trail of finding further information or for that matter how to go about making the healing happen.

It’s common knowledge that the ear is the receptor for sound, one of the five senses understood by children and adults alike. It’s also common knowledge that the ear is the balance center of the body, the role being done by the semi-circular canals. With a head injury it is not unusual that either  or both of these two areas are damaged. The intent of the therapy is to get the ears functioning properly again.

For me the issue of balance resolved itself in the first couple of years following my injury. Some people suggested that my unicycling experience makes my balance better. I care to disagree. I don’t think having better balance before the injury would prevent an injury in that area or necessarily shorten the recovery time.

My challenges relate to cognitive overload, inability to focus, functioning in larger social settings, and emotional overload in specific types of settings.

The consultation before starting my Safe and Sound Protocol ™ music therapy explained how most of my challenges arise from the way I perceive sound and how it affects my autonomic system.

The autonomic system is the part of the body that functions without us being intentional or conscious. This system includes breathing, heart beat, digestion and all the other organs. The only part of the autonomic system that we have direct control of is our breathing. Through our breathing we can affect change in other parts of the autonomic system.

One purpose of the autonomic system is to alert us to potential danger. When our body perceives danger we move out of our social functioning mode and into a ‘fight and flight’ mode. This is not a conscious action. Our body recognizes danger signals and reacts. High frequency sounds or low frequency sounds are recognized by the body as warnings. An animal’s growl or an animal’s screech causes a spontaneous reflex suggesting imminent danger.

The challenges that I listed above are related to how my ears perceive sound and how it is sent to the brain. With the injury the middle ear muscle, the stapedius muscle which by the way is the smallest muscle in our body, which is attached to the stirrup has been damaged. The intent of the therapy is to exercise that muscle so that sounds are heard and interpreted within the proper frequency range.

With the loss of muscle tone of the stapedius muscle, my ear perceives sounds which are within the social engagement mode as being in the danger frequency range. With the loss of muscle tone of this small muscle distorts the perceived sounds enough that the autonomic system goes into a ‘fight or flight’  response mode many times in the day.

The difference in the sound is not something that I’m conscious of. I have dealt with challenges related to sounds; loud sounds, sounds of a particular timbre, unusual acoustics in certain environments. I was not able to connect these different experiences to the difference in the sound frequencies or the autonomic system’s response to it.

Fatigue has been my nearly constant companion over the past 5 years. It’s because one can only handle so much ‘fight and flight’ responses before the adrenal gland becomes depleted. Every time we get an adrenaline rush the body needs recovery time to replace the adrenaline. I have taken daily doses of kelp and iodine to replenish my adrenal gland. However, the supplements replace the adrenaline that is lost but doesn’t stop the over use of adrenaline. Real healing won’t happen if I don’t get beyond masking the symptoms with my daily supplements. Masking symptoms is at best a stop gap measure. To make real progress one needs to stop the body from depleting the adrenaline gland.

Preparation and Testing

Prior to starting the Safe and Sound Protocol (TM) intervention I went through the Measure of Foundational Ability Assessment. The assessment was to determine the main areas of concern and the extent of the problem. Issues relate to balance were minor. Issues related to focus, attention and cognition were most pronounced.

One of the factors in restoring proper sound transmission to the brain is having the ear hear a clear or properly tuned sound. Sound travels to the middle ear through air and through our bones. Bone conduction of sound moves ten times faster than air conduction. For our autonomic system to interpret sound properly it needs to receive properly balanced sound. With the loss of muscle tone in the Stapedious muscle the balance between bone conduction and air conduction is skewed.

Listening

The SSP (

20200503_131323
Greenhouse or Conservatory?

It was a wonderful surprise experiencing a major improvement in my short term memory after two hours of music therapy. I started the Listening Therapy five years after my injury. Why not earlier? Mainly because I hadn’t known about the treatment.

My short term memory challenges impact several areas of my daily functioning. it effected my executive functioning, planning, keeping things organized and maintaining focus. There are probably other related elements but those are the elements that come to mind.

How It Happened

I was about 3 days into a minor building project, building a small greenhouse from repurposed materials, when I started my Listening Therapy. In working on the building project I was struggling with the daily frustrations of having to remeasure the same things time and again. I take a measurement, walk ten steps and then question my recall of the measurement. Eventually I got the first part of my project figured out.

I was two days into a 5 hour Safe and Sound Protocol near the start of my Listening Therapy when I realized something had changed. I found myself remembering measurements up to 10 minutes later. I was no longer misplacing tools. Hard to believe what happened. Over the past five years misplacing tools had become all too familiar.

The progress on my project started going much smoother because I wasn’t wasting time looking for tools and getting sidetracked. It had become quite common for me to walk to the garage or my lumber storage to pick up something and then find myself reorganizing things or doing some work on an unrelated partially finished project. That wasn’t happening. I would remember what I was looking for. I would know where to find what I needed. I would stay focused on what I set out to do. I would make note of things I would need later.

20200502_095824
The view from within

This change was the most exciting improvement in my five years of recovery. The dramatic change after two hours of music therapy was far beyond what I expected. So let me give you some background.

Safe and Sound Protocol ™

The SSP (Safe and Sound Protocol) is a research-based therapy showing significant results in just five days in the following areas:

  • Social and emotional difficulties
  • Auditory sensitivities
  • Anxiety and trauma related challenges
  • Inattention
  • Stressors that impact social engagement

The above checklist taken from the SSP website succinctly summarizes and matches the areas of challenge I continue to struggle with. This is the information and treatment I would have welcomed a few years back. I had heard inklings of information related to SSP.

Not long after my brain injury I had heard comments that the daily challenges following a brain injury often had to do with the ear. My problem was not knowing where to pick up the trail of finding further information or for that matter how to go about making the healing happen.

It’s common knowledge that the ear is the receptor for sound, one of the five senses understood by children and adults alike. It’s also common knowledge that the ear is the balance center of the body, the role being done by the semi-circular canals. With a head injury it is not unusual that either  or both of these two areas are damaged. The intent of the therapy is to get the ears functioning properly again.

For me the issue of balance resolved itself in the first couple of years following my injury. Some people suggested that my unicycling experience makes my balance better. I care to disagree. I don’t think having better balance before the injury would prevent an injury in that area or necessarily shorten the recovery time.

My challenges relate to cognitive overload, inability to focus, functioning in larger social settings, and emotional overload in specific types of settings.

The consultation before starting my Safe and Sound Protocol ™ music therapy explained how most of my challenges arise from the way I perceive sound and how it affects my autonomic system.

The autonomic system is the part of the body that functions without us being intentional or conscious. This system includes breathing, heart beat, digestion and all the other organs. The only part of the autonomic system that we have direct control of is our breathing. Through our breathing we can affect change in other parts of the autonomic system.

One purpose of the autonomic system is to alert us to potential danger. When our body perceives danger we move out of our social functioning mode and into a ‘fight and flight’ mode. This is not a conscious action. Our body recognizes danger signals and reacts. High frequency sounds or low frequency sounds are recognized by the body as warnings. An animal’s growl or an animal’s screech causes a spontaneous reflex suggesting imminent danger.

The challenges that I listed above are related to how my ears perceive sound and how it is sent to the brain. With the injury the middle ear muscle, the stapedius muscle which by the way is the smallest muscle in our body, which is attached to the stirrup has been damaged. The intent of the therapy is to exercise that muscle so that sounds are heard and interpreted within the proper frequency range.

With the loss of muscle tone of the stapedius muscle, my ear perceives sounds which are within the social engagement mode as being in the danger frequency range. With the loss of muscle tone of this small muscle distorts the perceived sounds enough that the autonomic system goes into a ‘fight or flight’  response mode many times in the day.

The difference in the sound is not something that I’m conscious of. I have dealt with challenges related to sounds; loud sounds, sounds of a particular timbre, unusual acoustics in certain environments. I was not able to connect these different experiences to the difference in the sound frequencies or the autonomic system’s response to it.

Fatigue has been my nearly constant companion over the past 5 years. It’s because one can only handle so much ‘fight and flight’ responses before the adrenal gland becomes depleted. Every time we get an adrenaline rush the body needs recovery time to replace the adrenaline. I have taken daily doses of kelp and iodine to replenish my adrenal gland. However, the supplements replace the adrenaline that is lost but doesn’t stop the over use of adrenaline. Real healing won’t happen if I don’t get beyond masking the symptoms with my daily supplements. Masking symptoms is at best a stop gap measure. To make real progress one needs to stop the body from depleting the adrenaline gland.

Preparation and Testing

Prior to starting the The SSP (Safe and Sound Protocol)  (TM) intervention I went through the Measure of Foundational Ability Assessment. The assessment was to determine the main areas of concern and the extent of the problem. Issues relate to balance were minor. Issues related to focus, attention and cognition were most pronounced.

One of the factors in restoring proper sound transmission to the brain is having the ear hear a clear or properly tuned sound. Sound travels to the middle ear through air and through our bones. Bone conduction of sound moves ten times faster than air conduction. For our autonomic system to interpret sound properly it needs to receive properly balanced sound. With the loss of muscle tone in the Stapedious muscle the balance between bone conduction and air conduction is skewed.

Listening

The SSP (Safe and Sound Protocol) is based on listening to the music. The intent is to restore the muscle tone of the stapedius muscle. To accomplish this, songs are selected based on the frequency range in the song. Some songs have been modified to achieve the most effective sound frequencies. By controlling the frequencies the stapedius muscle is being exercised to improve the muscle tone. The protocol is designed to work through the therapy in half hour blocks of listening.

The possible side effects of the protocol are various. There is the possibility of reliving past trauma. Or one can become agitated or emotional. It can create anxiety. Or there can be intervals of increased level of fatigue.

There are several remedial exercises recommended to minimize the side effects. If the side effects are too severe the pacing of the therapy is slowed down, such as taking a one day break between listening sessions.

The music therapy was done in the comfort of my home. My initial consultation was done via video conferencing. During the listening process I sent my therapist daily updates on how the therapy was progressing and how my body was responding. The daily monitoring was in important part of achieving an effective outcome.

In Short

I never expected this initial step in the music therapy protocol to bring about such a profound change. The next step in my music therapy is to provide maintenance to support the improvements that have been made. It’s like having a fitness program. There needs to be followup to not lose the the gains that have been made.

It’s the research that went into Dr. Stephen Jorges Polyvagal Theory that gives me confidence in the potential effectiveness of this program. His theory makes some very convincing connections between the vagus nerve of the autonomic nervous system, the middle ear, the amygdala and the prefrontal cortex. I won’t pretend to do justice to his ideas in a short paragraph or two. I will defer to Dr. Stephen’s son Seth Jorges  who has a wonderful introduction on You Tube.

I did hear from one person through a brain injury support group who had used the SSP therapy but noticed no changes. There needs to be an assessment prior to starting since the therapy needs to be tailored to individual needs. No two brain injuries are the same. So no two programs are identical.

I hope to share the next steps and my progress as my music therapy continues.

If you think this has potential for you or someone you know and would like to learn more I would be pleased to provide contact information.

Listening Therapy is based on listening to the music. The intent is to restore the muscle tone of the stapedius muscle. To accomplish this, songs are selected based on the frequency range in the song. Some songs have been modified to achieve the most effective sound frequencies. By controlling the frequencies the stapedius muscle is being exercised to improve the muscle tone. The protocol is designed to work through the therapy in half hour blocks of listening.

The possible side effects of the protocol are various. There is the possibility of reliving past trauma. Or one can become agitated or emotional. It can create anxiety. Or there can be intervals of increased level of fatigue.

There are several remedial exercises recommended to minimize the side effects. If the side effects are too severe the pacing of the therapy is slowed down, such as taking a one day break between listening sessions.

The Listening Therapy was done in the comfort of my home. My initial consultation was done via video conferencing. During the listening process I sent my therapist daily updates on how the therapy was progressing and how my body was responding. The daily monitoring was in important part of achieving an effective outcome.

In Short

I never expected this initial step in the music therapy protocol to bring about such a profound change. The next step in my music therapy is to provide maintenance to support the improvements that have been made. It’s like having a fitness program. There needs to be followup to not lose the the gains that have been made.

It’s the research that went into Dr. Stephen Jorges Polyvagal Theory that gives me confidence in the potential effectiveness of this program. His theory makes some very convincing connections between the vagus nerve of the autonomic nervous system, the middle ear, the amygdala and the prefrontal cortex. I won’t pretend to do justice to his ideas in a short paragraph or two. I will defer to Dr. Stephen’s son Seth Jorges  who has a wonderful introduction on You Tube.

I did hear from one person through a brain injury support group who had used the SSP therapy but noticed no changes. There needs to be an assessment prior to starting since the therapy needs to be tailored to individual needs. No two brain injuries are the same. So no two programs are identical.

I hope to share the next steps and my progress as my music therapy continues.

If you think this has potential for you or someone you know and would like to learn more I would be pleased to provide contact information.

Five Star Hospitality

This past winter, barely a month before the COVID 19 travel shut down, I experienced hospitality that truly came from the heart. It could not have come from a place of abundance except for an abundance of the heart. The hospitality I experienced defies a suitable adjective.

I had traveled to this country a few times. Before I left home I had packed things that would be of use to the local residents. I had gleaned from my abundance of things. I had observed on previous trips the type if items that would be very much appreciated. No I didn’t bring what was necessarily most essential.

The people I visited live in the poorest province of their country. As they await help for basic infrastructure or daily needs they are regularly told that the government has run out of money. So they have learned to make do.

Given my Canadian lifestyle we had assembled a suitcase full of things that would be appreciated.

  • knapsacks (essential when you walk everywhere)
  • baseballs (it’s their national sport)
  • T-shirts (still need clothing in a warm climate)
  • bath towels (always appreciated)

On my most recent trip I learned that there are various other items that are now in short supply. The US trade embargo had been eased under President Obama. After he left office the embargo had tightened up considerably. So many necessary items were in short supply:

  • personal hygiene products
  • shampoo, tooth paste, toothbrush
  • pens
  • bicycle tires and tubes
  • tube patch kits
  • beer

I decided one day to travel inland. I had been into the interior by 4X4 a couple years back. This time my most suitable means was to go by bike. Except for the first kilometer the bike was not too helpful. I walked most of the way in addition to pushing a single speed bike up the mountain with me. It meant almost 1000 meters of climbing for an 11 km trip. The climb was even too steep most of the way to ride my bike down on the way back.

The 26 C heat of the mid morning sun against the south slope I was climbing was enough to make me consider more than once to abandon the climb. But I knew I just had to get to the top of the first crest and things would be better. There would be some shade and the road if you want to call the mountain track I was in that compliment, would level off enough to resume biking.

I was not disappointed. The scenery became spectacular. The variety of vegetation amazing. The sounds of birds when one is biking is not drowned out by any other sounds.

I passed several homesteads. There was no one in the yard so I kept going. After reaching a small crest of the road I could enjoy a few minutes on the bike as I coasted down. It was near the bottom of this long hill that I approached a couple of homesteads with definite signs of life.

I should mention that I do not speak Spanish and once one is off the resort no one speaks English. However, the language gap was not a problem. I had with me a few baseballs and a couple baseball caps. With the few greeting words I know in Spanish and a knapsack with a few ‘gifts’ I found a great opener. The baseball and cap I offered brought a huge smile. I asked if he had a child. He said yes so I told him the cap was for his son.

After talking with the young man (well I had no idea of his age) he invited me in. It was close to noon. He introduced me to his wife. After complimenting him on some of the things in his sparsely furnished house he wanted to show me his television. I assumed it was a black and white model. I couldn’t tell because only the audio worked. He was proud of his concrete living room floor. When he had poured the concrete he had used the bottom of a drinking class to create a texture in the finish. A technique not unlike stamping concrete to make it look like textured rock, except on a much simpler scale.

He called me into his backyard to show me the coffee beans he was roasting on a fire pit. When I stepped back inside his wife had set out some food for me. A bowl of bean soup, some rice and a glass of water. I declined the water by pointing to my camel pack. I had always been advised to be cautious about drinking water from unfamiliar sources.

20200201_134515
It’s not the extravagance of the kitchen that counts.

When I was finished my lunch I was given a largish glass of expresso coffee. Now I’m not a  coffee drinker and so I first declined the coffee. Then I kicked myself for turning down the offer of hospitality. I quickly changed my mind. While I’m not a coffee drinker I did very much enjoy the coffee.

To keep the conversation going I shared some of the pictures I had on my cell. It provided a great back drop to sharing family and things related to daily living in a different country. It provided me an opportunity to learn more about their life. During my visit a neighbour and her daughter stopped by for a visit. They too were intrigued to have a visitor from Canada.

When I was ready to leave they wanted to take a picture of me with the family. As a parting gift I gave each of them a lapel pin of the Canadian flag. Just as I’m ready to walk back to the road I was offered a plastic bag of roasted coffee beans.

It was by now 2:00 pm. As I started back I realized how hot is was outside. I was even more aware how the generous lunch and the break gave me the energy and sustenance I needed for the trip back. The trip back while mainly downhill was almost as slow as coming up. With the road being steep and the surface of gravel, dirt and boulders I could not trust the brakes on the bike to get me down safely. On a few stretches that were less steep I did attempt to coast down. After experiencing two spills I thought better of it. Not till I got onto a hard surface where I could get proper traction did I once more attempt to ride my bike.

I arrived back at the resort quite animated. My travel companions were quite amused and figured it was the double sized serving expresso coffee. They were partly correct, but for me it was the overwhelming generosity and hospitality from a family in the mountains.

Be not forgetful to entertain strangers: for thereby some have entertained angels unawares. Hebrews 13:2

What had me animated was not from entertaining strangers unawares but from having received hospitality from angels unawares.

Maple Syrup Season

Not yet tapped out

The Maple season has once more come to a close. Maple syrup season is somewhere between winter and spring. For maple sap to be available you need the night time temperatures of winter and the day time temperatures of spring. I enjoy the activity for various reason. One reason being that it the time of year when you can’t ski or skate anymore. But it’s also the season where it’s hit and miss for cycling.

So I’ve participated in the activities of maple syrup season for the past five years. The season can last as long as nine weeks or be over in four weeks.  When it ran for nine weeks or four weeks I was able to put away just as much maple syrup. It’s kind of like the difference between a sprint and a jog. The pace is different but you can cover the same distance.

This year I partnered with a farmer who provides learning opportunities for young people from around the world. These young people might choose to volunteer on a farm for a month or longer. So maple syrup production was one of the activities these young people were eager to learn.

At the start of the season I had a lad helping me for a day. He participated in putting in some maple taps as well as collecting the sap that had collected in the bottles. After collecting the sap, hauling it home and transferring it into the holding tank so it could run into the evaporator as needed, he asked what the next step would be. He wondered what ingredients we would add. He knew that the finished product would be a golden brown. That didn’t seem possible looking at the 500 litres of clear liquid. I told the lad that we add absolutely nothing to the sap. We simply light a fire, feed hardwood into the stove and let it boil. He was totally flabbergasted.

Little did he realize that the boiling or evaporating process was a matter of getting the sap with about 1% or 1.5% sugar solution to a point where it would be 66% sugar. That’s it. Nothing more, nothing less. That’s the beauty of maple syrup. Mother nature’s liquid gold.

For anyone who’s ever tasted it there aren’t many sweet things better than that. For our family maple syrup has replace our use of honey and sugar for many snacks. Tea with maple syrup. Making strawberry jam and adding some maple syrup. Cooked oats for breakfast with maple syrup. Plain yogurt with some maple syrup added. And not to forget, waffles and pancakes with maple syrup. It doesn’t end with just maple syrup. Two years ago we made maple wine. After letting it age for a couple years it has become a wonderful evening drink. What we haven’t tried is making maple toffee or maple candy. That might be a project for another year.

I also enjoy bottling maple sap and freezing it. It makes an excellent drink when I’m cycling in the hot summer weather. Maple sap has 11 beneficial nutrients when it is unpasteurized. Whereas maple syrup has three beneficial nutrients as the boiling process destroys most of the nutrients.

When the season is over I’m glad I’m done carrying the 15 kilo pails, hauling firewood and tending the fire. For this time of the year you can’t beat making maple syrup as a great outdoor activity. It helps me manage my TBI symptoms and leaves me with a great sense of satisfaction.

Benefiting from Social Isolation

20200313_133723
Collecting Sap in a Ten Acre Bush

I know many people on the brain injury support group who commented that the public health request for social isolation did not create a  new experience for them.  I was reading that about a week into my social isolation after having made a couple patient visits in a hospital in early March.

The brain injury site comment made me think back five years to my social isolation in the months following my TBI. I spent most of my day being mostly inactive. I was fortunate enough to have borrowed a dog that needed some walks. That’s what got me out a couple times a day. On those walks I didn’t care to meet people. The effects of my injuries left me with little inclination to talk with others.

It’s been over a month of social distancing and I would say this new type of social distancing or social isolation is for the most part suiting me just fine. That’s not to discount the unknown and the devastation that his happening in the lives of numerous people around the world.

My Personal Space

Dealing with social isolation is addressing at least three of my brain injury stressors. These are stressors that five years later continue to present me with challenges. Having three of my stressors more or less put on hold is making a noticeable improvement in my daily activity and ability to function.

Little did I expect to have a world wide health event provide an opportunity to gain new insights into the challenges I have been adjusting to for the past five years. It also makes me wonder how many other people who are neurologically diverse see some areas of improvement due to the current situation.

Social Settings

Social settings are an area of challenge that I thought I was learning to manage quite well. Any time I’m with 3 or 4 other people my sensory loading stays within manageable limits. Larger groups create exponentially greater challenges. So it helps me that our Public Health officials  have drawn the line at no more than  five people.

It’s the larger social gatherings which I no longer need to navigate by monitoring my sensory loading. During this time I’m not expending any energy on self monitoring when I’m attending a worship service, a concert or a large social gathering.

That doesn’t mean I’m totally home free in this area. Today I took part in two video conferencing events. We had a Sunday morning coffee time chat with about 25 members of our church.  At first is was a free for all as people were coming into the meeting, helping people adjust their video settings and other software quirks.

I’m glad our pastor took the role as ‘chair’ and structured the sharing. Before he took the ‘chair’ role I was starting to feel myself fading more and more. I was finding the need to monitor my sensory loading as the conversation was jumping all over the place.

Later in the day we had an Easter gathering by video conferencing with family members in three different time zones. With our four children coming together on one site it was quite manageable.  It was a relaxed setting and a slow pace because most of the family members were playing Stock Ticker. (By the way their game was going better than the real life stock markets.)

Vestibular Ocular Challenges

In the last little while I have made some headway in figuring out the challenges I have with longer road trips. I require break for most trips of over an hour. While I have figured out how to avoid needing recovery time for a day or so following a road trip, I still need to schedule regular breaks. The drawback is that it adds to the length of each out of town trip.

With the current mantra of Stay Home, any road trip is out of the question. One less area that I need to consider.  I no longer need to decide whether an out of town trip is worth the recovery time.

Noise Factor

I am no longer feeling bombarded by noise. With the reduce activities, whether it’s minimized traffic or other activities, I am not getting overwhelmed by noise.

The calmer environment has made the sounds of birds singing, the wind in the trees and other sound of nature more noticeable. These are sounds that seem to belong they aren’t jarring, and therefore don’t create the sensory loading that many of the mechanical sounds create.

Cognitive Demands

With the other three sensory areas being very much reduced my body and my brain has more energy and capacity to deal with cognitive challenges.

Following my brain injury I have been living near the edge of my physical, cognitive and sensory limit. This had put me much more in tune to the different things that puts a disproportionate demand on the body or brain. It has allowed me to appreciate what a person can tolerate and manage and what subtleties can make a big difference.

Emotional Fatigue

During this time there are  many fewer demands placed on me. My brain and body are much better able to navigate each day. This had given me much more energy to carry out the physical activities that I’m eager to do. I’m making better progress on designing a threshing machine for small scale bean harvesting. I’m putting in quite a few hours a day getting the garden ready, whether that’s tilling, getting seedlings started or doing the annual maintenance with the gardening equipment. It’s great to come to the end of the day and be physically tired with a sense of satisfaction, not be mentally fatigued and disappointed in feeling like I haven’t accomplished what I set out to do.

Many times a day I find myself emotional challenged. When I hear stories of people reaching out to help others I’m moved. When I hear personal stories of loss due to the pandemic I find myself in tears. When I hear how nurses I know are  working without proper protection I’m afraid for them. When I see how inconsiderate people can be I’m upset and sad. Sad that some people are so self absorbed that they lack consideration for others.

There are people who are finding themselves in tough situations due to losing their job. There are seniors having a difficult time getting groceries and other supplies.  Seniors in nursing care facilities are particularly vulnerable. Food Banks are finding their donations dry up just when more people need their services.  Hearing the personal stories surrounding these tough situations is emotional upsetting.

In order to reduce the emotional sensory loading I need to monitor what news items I’m reading. While I want be informed about what is happening I need to monitor the number of personal accounts that I read. Having said that, most news casts have disturbing news items that add to emotional loading.

Wider Spread Benefits

Overall I’m finding myself in fewer challenging situations. It’s a relief on that level. I’ve heard from others who are not dealing with an ABI find the social isolation a chance to catch their breath.  More people are recognizing their need for solitude. For some it translates into cleaning out a closet or organizing a pantry or making space in the garage. If that was me it would be time for reflecting and re-evaluating what I’m doing.

As I hear about Provincial Parks, Conservation Areas, City Parks, and Forests being closed to visitors I wonder where people can go to get a break and get some fresh air and exercise.

Earlier this month I had a 10 acre bush in which to get exercise as I collected maple sap and tended the fire to make maple syrup. Even now I’m grateful to have an acre of land to keep busy; preparing the soil to grow vegetable, getting exercise, breathing in fresh air and finding solitude. When I’m there it’s easy to forget what is happening in the wider world.

Next Posting

I’m finding many personal benefits in following the COVID 19 protocols. Despite the benefits I’m up against some heartbreaking challenges. The stay at home part of the protocol is depriving me of some life milestone opportunities for in person visits.  These deprivations are both concerning for others and troubling for myself. I’ll save that for my next post.